How available to European children and young people with cerebral palsy are features of their environment that they need?
Across Europe, most kids with CP still lack basic physical adaptations at home, school, and in transit, and the same regions stay behind year after year.
01Research in Context
What this study did
Martina and colleagues asked parents and professionals about ramps, toilets, desks, and other features that kids with cerebral palsy need at home, school, and in the community.
They looked at the same group five years apart to see if things got better as the children became teens.
What they found
More than half of the children still did not have the basic adaptations they needed.
The same countries that were worst in round one stayed worst in round two, so the gap did not close.
How this fits with other research
Matson et al. (2009) already showed that poor transport and low social acceptance block adults with intellectual disability from joining community life. Martina’s data say the block starts in childhood and never goes away.
Salomone et al. (2016) found that European preschoolers with autism often get no early help at all, and the country they live in decides their fate. Martina’s CP sample shows the same postcode lottery for school-age kids, so the problem cuts across diagnoses.
Ummer-Christian et al. (2018) list dentist offices that lack ramps or trained staff as a main reason kids with developmental disabilities miss dental care. Martina’s numbers prove the same physical barriers exist in schools and public transport, not just clinics.
Why it matters
If the ramp, lift, or adapted toilet is missing, no amount of gait training or speech therapy can help the child use the building. When you write goals, add an environmental line: ‘By June, the school will install grab bars in the student toilet.’ Track it like any other target. Push the team to fix the space first, then teach the skill.
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02At a glance
03Original abstract
BACKGROUND: The UN Convention on the Rights of Persons with Disabilities requires accessibility to the physical and social environments. However, individuals with cerebral palsy (CP) have many difficulties in accessing the environment they need for functional independence and social inclusion. AIMS: To examine the availability of environmental features which children with CP need for optimal participation, and whether availability changed for them between ages 8-12 and 13-17 years. METHODS: The sample is the 594 children with CP, born 31/07/1991-01/04/1997, who took part in the SPARCLE study at age 8-12 (SPARCLE 1) and again at 13-17 years (SPARCLE 2). Participants were randomly sampled from population registers of children with CP in eight European regions; one further region recruited from multiple sources. Data about environment were captured with the European Child Environment Questionnaire (60 items). Differences in availability of environmental features between childhood and adolescence were assessed using McNemar's test; differences between regions were assessed by ranking regions. Differences in availability between regions were assessed by ranking regions. RESULTS: For seven environmental features significantly (p<0.01) fewer individuals needed the feature in SPARCLE 2 than in SPARCLE 1, whilst for two features more individuals needed the feature. Nine features in SPARCLE 1 and six features in SPARCLE 2 were available to less than half the participants who needed them. Eight features showed significantly (p<0.01) higher availability in SPARCLE 2 than in SPARCLE 1 (enlarged rooms, adapted toilet, modified kitchen and hoists at home, adapted toilets and lifts at school, an adequate vehicle, grants for home modifications) while none showed significantly lower availability. The relative rankings of the better and less good regions persisted from the age 8-12year age group to the 13-17year age group. CONCLUSIONS: Needed environmental features are unavailable to many children at ages 8-12 and 13-17 years. This lack of availability is more pronounced in some regions than others, which probably results from their policy, legislative and statutory frameworks.
Research in developmental disabilities, 2017 · doi:10.1016/j.ridd.2017.09.018